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A First Sign (or second)

This afternoon I dropped by Shirley Hazel’s house. Kate had left her computer in her car the other day. When I picked it up, Shirley said very nicely (as though she were trying to send me a message gently in case I didn’t know) that “”Kate is getting so forgetful.” I said, “I know.” Then she went on to say that she had enjoyed working with her. They work together to interview candidates for PEO grants to continue their college education. In addition to interviewing them, they also assist in getting the applications in to the national office and shepherding the applications to their completion. They have been successful several times. Furthermore, they have passed along the names of good candidates to other chapters who might nominate them. Each chapter is entitled to nominate only two candidates.

At any rate this is the first contact I have had with someone who mentioned the memory issue. Of course, that may have been what our pastor had in mind when he asked me if Kate were all right two summers ago. Although I feel confident that most people would not suspect that she has AD, I do recognize that anyone who works closely with her is bound to suspect. It makes me wonder again about our children when we are together in Jackson Hole in June. It would be easy for her to do or say something that would make them suspicious. I have even begun to wonder if I should break down and tell the children at some point after our vacation with them is over. I really don’t want to break my agreement with Kate that they not be told. On the other hand, they are not in touch a lot, and it would be nice if they knew that time is running out. In that respect, I am the luckiest person of all because I know and am able to make the very most of our time together. It has made all the difference in the world. Were it not for that knowledge I would probably be fuming a good bit over the many things she does. I clearly find some of these things annoying; however, I always stop and think that she can’t help it. That helps me to be more patient with her.

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Patience in Short Supply

We were at Denny’s today. It was cold inside. Kate couldn’t wait to order. She wanted her coat right then. I went out to the car and got it. The irony is that I wait and wait for her because she moves so slowly, but when she wants something, she wants it “now.”

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Traveling in Peru and Ecuador

Kate and I have typically traveled on our own. The major exception was our trip to Tanzania. We are now at the end of a trip to South America (Peru, Manchu Pichu, the Amazon, Ecuador and the Galápagos Islands). Here are a couple of observations.

Traveling with a group requires a schedule. Overseas Adventure Travel (OAT) clearly understands this. This meant each of our days has been planned, and we are all expected to comply. That has been a challenge for Kate. She can’t remember the schedule at all and depends solely on me to get her places on time.  Since she is not naturally punctual, this has been something of a problem.

The biggest problem for me is getting ready for everything. She never wants to get packed before going to bed. That means getting up earlier than I want and being rushed to be on time for our departure. We have had numerous early departures. Tomorrow we leave hotel at 5:30. When I suggested getting back to the hotel to prepare packing for tomorrow, she didn’t want to do it. This has been a pattern throughout the trip.

The trip, by the way, has been fantastic, but I don’t plan to make any more group trips, possibly fewer international trips if at all.

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A Couple of Observations

When I got home from visiting Dad tonight, Kate gave me the look that showed she was concerned about my not coming home as early as she had wanted. She did, however, tell me she was glad to see me. We got ready to go out to the spa before having dinner at home when she said, “At least this week, I get to have you all to myself.” Then she very quickly realized that we would have Brian with us. It is another indication of her feeling of insecurity when she doesn’t have me to herself. By the way, I am not bothered by this. I am actually flattered.

There are two other indications of where she is with respect to her memory. Last night we received a text from Rachel with pictures of the children at a Missions baseball game. She indicated that this was the second half of the birthday present that we had given to Taylor in April. I showed her the picture as soon as it came through. Tonight she saw the text on her phone and told me about it. She hadn’t remembered my showing her the picture last night. It was something completely new to her.

The second thing is that I said something to her the other night and then said, “Don’t you remember . . .” She said, “I wish you wouldn’t say that.” I asked what she meant. She clarified that it was the words, “Don’t you remember.” She doesn’t like to be reminded of what she can’t remember. I apologized and said that I try not to do that, but I slip and would work harder.

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What is Alzheimer’s like in the early stages?

This is a stage when the disease is mostly hidden from other people; however, to someone like me, it seems more obvious. The major problem is day-to-day functioning. For example, Kate has worked for more than a week on a half-page letter of reference for a young woman applying for a PEO scholarship . She has revised and revised it. I signed off on it several days ago, and discovered that she had never sent it and was revising it again. Two months in a row she has forgotten her monthly PEO meeting until someone called the night before. In fact, I just went into the bedroom to wake her up so that she would have plenty of time to get ready for PEO, and she had forgotten about the meeting. Of course, it is likely that she would have remembered it after getting up, but it would also be common for her to have forgotten completely. Two days ago she lost her purse with all her credit cards and ID, and we are scheduled to make a trip to NY on Tuesday. Right now I am assuming we will use her passport as ID. (Note added at 10:03 am. Kate found her purse at 9:30 this morning. It was beside her chair in our bedroom where she often works on her computer. She is quite relieved.) Her personal possessions are continuously being misplaced. She is less able to do the simplest things on the computer. All of these things frustrate her tremendously although we don’t talk about it. We just exchange knowing glances when things happen, and I find myself often giving her a hug.

More than ever in our married lives, she feels she really needs me. When I come home from visiting Dad each evening around 6:00, she often looks miffed that I have been gone so long. Then she will often say, “I am glad you are home.” This is not said in any routine way. It is a genuine expression of her insecurity and need for my presence. She also feels she needs me to take care of things for her.

She gets along beautifully with friends. They really wouldn’t know unless she asks a question about something they have just talked about. Even that is something that doesn’t normally tip off the person since all of us do that sort of thing occasionally.

She can’t follow instructions or any explanation of things nor is she able to give instructions. She will quickly stop me when I start to explain something. With others, she will simply “listen” and not process what they are saying. She frequently asks me to make calls for her, for example, to her doctor’s office to get a prescription refill or almost anything she can pass off to me.

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An Emotional Moment

I am not sure, but I think I have seen signs of Kate’s becoming more emotional that may be linked to AD. At the moment, I cannot recall any past incidents that have made me feel this way. Yesterday, however, she called me while I was visiting Dad at Life Care. She asked if I could come home right away. I told her I would and asked what was up. She told me that an orange cat that has been around our neighborhood recently had been found in the street and that she had taken the cat, who was warm but appeared to be dead, around to our patio. Before I got home, she called me once again to ask how long it would be before I got home. I told her I was just turning on to our street and would be there in a minute.

When I got home, I found her sitting on the loveseat on the patio holding the cat in her arms just as if she were holding a baby. She was not wildly emotional – just sad to have lost the cat that she had recently befriended and to which she had felt attached. I told her I thought we might contact the neighbors across the street to see if they knew whose cat it was. They did. It belonged to our next door neighbor. We called and left a message, and he came over when he got home. We had put the cat in a basket in our garage.

Even when we went to bed, she was still moved by the loss. This may have nothing to do with AD, but it seems to me that this was a somewhat different emotional behavior than I have observed in the past.

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Odds and Ends

Brian left last night after being here for a week. During the week that he was here, Kate exhibited periodic “fright/annoyance” at various loud noises he made. She repeatedly had to tell him to stop making certain noises. He always stopped, but would forget and make them again later.

Kate  also had her most recent appointment with Dr. Reasoner on Wednesday afternoon. This time I did not go with her since I was taking care of Brian. I felt Kate would be all right by herself. I had suggested a few weeks ago that we postpone the appointment, but she wanted to go ahead. She found talking with Dr. Reasoner to be soothing. She likes her style of being forthright but in a sensitive manner. She doesn’t sugarcoat things.

On the way to the doctor’s office, Kate got lost and called the office for directions. They were quite understanding and got her there.

As we waited for Brian’s plane to leave last night, Kate asked for my help in arranging a time for her “Library Ladies” group to have lunch. It is her time to set the date and place. She just hadn’t done so and needed my help in figuring out when people could come. Several had sent her emails with possible dates, but she couldn’t manage to go through them and see what dates were best. Only 4 people had responded; so it wasn’t a big deal, but it was too difficult for her. I gave her the best dates, and she entered it in her iPhone. When we met for lunch she said she had been unable to locate the information and couldn’t remember it and asked for my help again. We went through it one more time, and this time I think it will work.

Her willingness to ask for my help is good but also makes me sad. She recognizes that she can’t keep things straight, so she needs help. This morning she sent me an email with 2 appointments for next week. She likes for me to put them on my calendar so that I can make sure she doesn’t forget.

On the positive side, I am amazed at how well she is accepting her condition. I know she has ups and downs, but, on the whole, she is doing remarkably well. Given her chronic depression, I would have thought this would be a much lower blow than it has been.

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Challenges of Everyday Life

When I arrived home from visiting Dad last night, Kate was on the phone with a person from tech support for the software that she and Ken are using for the the family album. When she finished, she seemed especially frustrated and said that she would be glad when this album is finished. Then we went to Chipotles for dinner. I commented on her frustration and asked if she had been able to recover a file that she had lost. She had not. In an effort to understand and possibly help her, I asked what she had tried to locate the file. She said she didn’t want to talk about it. This has become a very common pattern. She doesn’t understand what she is doing and can’t remember things she has done; so she is unable to communicate them to me which makes her more frustrated. I apologized for asking and said that I understood it was a problem for her, but I found myself reflexively trying to solve the problem.

All of this is back to what I wanted to say today. She finally said this had been a particularly depressing week. When I asked if there was anything particular that had happened, she just said that her brain was just not working the way it should. This conversation made me recall my mother’s frustration in the early stages of her AD when she would say, “I don’t know what’s happening to me. I just can’t remember anything anymore.” In the early stages people with AD know there is a problem and are frustrated. It is only in later stages when they are not bothered. I hope that is a long way off for Kate because when that point arrives, she will be different in other ways that she does not want (i.e., more dependent, less in touch, more obviously suffering from AD).

We have still not told anyone of her diagnosis and don’t intend to do so until some undefined later point. That will probably come when it is beginning to become more obvious to others that something is wrong.

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My Own Moments of Frustration

Just a quick update since the last entry. Last week for the first time, I found myself being a little bit bothered by Kate’s forgetfulness. In addition to the usual things that happen, phone misplaced, plans forgotten, etc., two small things actually led to my not being understanding the way I have been. What I mean is that I intellectually understood, but I was emotionally bothered anyway. Here is what happened.

First, she didn’t make any effort to get ready for the visit of our friends, the Robinsons, this past Wednesday. Normally, she might work to get the house in the best shape possible. She arranged for the person who helps her with landscaping to come over at 10:00 that morning even though the Robinsons were due to arrive between 11:00 and 11:30. Then she stayed outside working with her longer than I thought she should have. I went out at 10:30 just to remind her of the time and that they were coming as early as 30 minutes from now. She ultimately came in closer to 11:00. She wanted to scoop up some things that were in the family room and dump them on the floor and chairs in our bedroom and to close the bedroom door. I told her I felt it looked better to have the door open. She accepted that and put things in our bathroom and closed that door.

The other thing involved her completing a letter of recommendation for a local college student’s application to PEO for a scholarship for the fall. This is something she was supposed to do at least 2 weeks ago. She was going to do this before her PEO meeting on Thursday morning. The first complication she ran into was that her computer “died.” That meant she needed to use mine. Her time ran short. She decided not to go to PEO and to come to my office to work on the letter. It took her almost until lunch to get to the office. Then I was going to lunch and she went with me with plans to work on the letter after lunch which she did. I left to go see Dad around 4:00. When I got home after 6:00, she was not there. I called and reached her on her cell at the office. She was still working. When she was ready to leave, she couldn’t fine her purse. I suggested she call the restaurant where we had eaten lunch. She did so and got the purse. (The week before she misplaced her primary car keys and is now using one of the backups that I had made the last time she had lost her key).

Although I thought the letter was essentially finished and all she needed to do was mail it, she worked at the office Friday afternoon. She needed help getting it printed and checked and rechecked the letter and the student’s written statement of need. She found this difficult and was very frustrated. I said that in the future she might try to minimize her doing things like this. She said she had been thinking the same thing. This is another recognition of the impact of AD. By that point, I found myself more sympathetic and haven’t felt anything but acceptance of the situation since.

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An Everyday Mistake

I just got an email from Kate and here is another illustration of confusion. At lunch she said she had to get money for our housekeeper who had said we owed her for last week and this week. When she went to Doris to pay her, she found that she had misunderstood Doris. We had already paid her for last week before we left for Edinburgh.